Abstract 714: Using empathy-driven instructional design to reimagine cancer research
Authors: Janet Brishke, Zachary Jones, Elizabeth A. Shenkman
Journal: Cancer Research (2023)

Abstract Following the advent of groups like PCORI, patient engagement in clinical research is no longer a novel concept. However, involvement of lay stakeholders in areas such as artificial intelligence or biomedical informatics can pose challenges. Community stakeholder involvement in cancer research can prove especially challenging as cancer has personally impacted nearly everyone. The purpose of this study was to assess whether addressing needs outlined in the Self-Determination Theory (SDT) helped community stakeholders feel prepared for this role. The University of Florida (UF) health science center employs Citizen Scientists (CSs) as partners in the research process to offer insight otherwise unavailable to researchers. To prepare for this role, CSs complete an online curriculum, co-created by their peers and UF researchers, to educate them about clinical research. The UF Health Cancer Center created the CS Cancer Curriculum (CSCC) as a companion piece to the clinical research course. To create the CSCC, researchers, administrators, and CSs and participated in a needs assessment to identify common interests. Through this needs assessment, the research team found that each CS had personal connections to cancer and the team felt an empathic approach to the course design was necessary to respect these experiences. The SDT and reflective questions were applied throughout the course. Storytelling was used to present a multipart case study series with a patient, family members, and physician. Those videos were accompanied by a note that the story may cause the viewer to recall their own painful experiences. The note then prompted viewers to review resources from the National Cancer Institute support services page if needed. All but two of the nine CSs scored a 95% or higher across all questions in the CSCC. Overall course assessments included a pre/posttest and a case study assessment based on the SDT. Relatedness (100%) and autonomy (83%) were the highest construct scores of the case study assessment, indicating that CSs felt most empowered in their role once they had more of an emotional connection to the subject matter. For the pre/posttests, confidence in their ability to learn and apply the content to their work grew slightly (79% to 80%). However, scores for the “Capable” construct rose by several percentage points. At the pretest, 81% felt they were capable of learning the content and, at the posttest, 86% felt that they were capable of applying the content. Taking the time to ensure that the psychological needs of learners are met can result in committed, engaged research partners who can provide pragmatic feedback and have long-lasting effects on cancer research. The CSs in this study were passionate about this work, despite the intimidating jargon and dense concepts used in this field. They are an excellent example of how impactful community stakeholders can be if researchers can meet them where they are. Citation Format: Janet Brishke, Zachary Jones, Elizabeth A. Shenkman. Using empathy-driven instructional design to reimagine cancer research [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 714.